Day to Day

My SPD Soapbox

Its a mommy night out and I get a text that says,  “your son is awake FYI”….. I cringe as I read it. Why throw frantic in a good, Moms Night Out? Don’t I deserve a night out, after hours of being with my children nonstop? The feeling of anger and fury erupt over me, and all I want is to sing at karaoke my own “fight” song, to finish off my night from my day to day life. Shattered, by last call, and feelings of anguish and frustration from a text that my baby is awake and needs me!
When? When can I have a break?

I breathe, then laugh, God has one sense of humor, no running away allowed!

Bar Closed, last drink called, Stuck! Enroute back to motherhood! But not a normal motherhood.

The Motherhood I Envision, children laughing, hugs, kisses, happiness, children understanding, understanding and accepting the word no, to simple things, moving through the day steadily without to much turmoil. I envision the nursing mom cuddling with her baby as she homeschooling her oldest … Such beauty!

Ugh! That doesn’t exist in my world.

My world exists with a toddler and a older brother with SPD. What is SPD? Sensory processing disorder! YES it exists! Is it fun? Loads ::insert sarcasm::
It is a disorder that affects 5-16% of people. My child hit the lotto!

When my little guy was 8 months old he started head banging. He would head bang out of frustration, out of enjoyment, out of silence. He would head bang, just because he could. As a mother it was painful to watch, as a behavioral therapist, prior to children, it was confusing. None of my techniques worked. Extinction….nope. Deep pressure…. Nope. Down on his level… Nope. He wanted nothing to do with me. He would repeat things over and over. I don’t mean typically either, not the “until i got it right”…. But the “I got it right and now we will do it 15 more times, if someone interrupts my sequence I will go crazy on them” right. Comparing my youngest to him when he was that age…..he does not do that, or even do half the things my oldest one did. His constant level of anxiety makes me nervous, i hurt for him. He is a bright kid, by 20 months he was saying his ABC’s, counting to ten, doing things that weren’t typical for his age.

Everyone said, don’t worry he will grow out of that, don’t worry, he seems typical to me, don’t worry, he is normal and there is nothing wrong with that. Hmm.. Then why do I have a knot in my stomach when I go out in pubic with him,wondering what battles I will have to fight? Why, when I look at kids his age, they don’t have the melt downs compared to the melt downs to my son? Why has my sons head banging turned into himself punching himself in the face or biting his arm? Why do I feel like I am the one who has messed up? Have I pushed him to far at a young age? Introduced him to solid food to young? Introduced him with educationally play areas to much? Tried to be on his play level? Been to so many parent classes because I believed I WAS the problem? Ahhhh!

Being a parent is hard! Even harder without the support you need. Without the break you need to revive. As a spouse of someone who could be gone for long periods of time, to a spouse to someone who could have them there all the time… It is hard. Harder when you have a emotionally unstable child. My son fits The Sensory Over-Responsive scenario: Predisposition to respond too much, too soon, or for too long to sensory stimuli most people find quite tolerable. (http://spdstar.org/what-is-spd/)It used to be a vacuum that could set him off to a blender that was downstairs in the kitchen that he could hear through his bedroom door upstairs, or a breeze that hit his body to quickly. It would be inconsolable crying for up to 2 hours. It now could be the frustration to not being able to tell me what hurts him to him just needing to go potty. It is so unbelievably upsetting as a parent! “Children with SPD struggle with how to process stimulation, which can cause a wide range of symptoms including hypersensitivity to sound, sight and touch, poor fine motor skills and easy distractibility. Some SPD children cannot tolerate the sound of a vacuum, while others can’t hold a pencil or struggle with social interaction. Furthermore, a sound that one day is an irritant can the next day be sought out. The disease can be baffling for parents and has been a source of much controversy for clinicians, according to the researchers.”(http://www.ucsf.edu/news/2013/07/107316/breakthrough-study-reveals-biological-basis-sensory-processing-disorders-kidsi) ::ugh::

Since being here in Germany I thought things would be better, and, it has and has not. I have been able to get my son occupational therapy, which has helped. We met a friend whose son has the same symptoms, two happy peas in a pod and two happy moms who did not have to explain themselves to each other, but they are getting ready to leave and now my son is asking to go with them and I am mentally begging them to stay for my sanity. Transitions are so hard! We have had a friend of a friend stay with us, who is unbiased, and says that she sees something definitely different in him and atypical to his age.(which make me feel less crazy), all great things from my stand point. However, I recently went on a trip and was told by ones I trusted and love, that I was being manipulated by him and if that was their kid they would of spanked them by now, and that their kids act the way they do because they spanked them, or in a conversation, that they agreed that I was just a bad parent. I don’t know, maybe I am both. Maybe I suck at this parent thing! But I am trying! I swear I am giving it my all!

I have done the scream free parenting, magic 1,2,3, the love and logic! I have read the books! I’m a baby and toddler on the block pro! I am trying and when you don’t see it, it hurts! I break! I need a break. I need a moment of silence from two children who need me so much more!

I have two children of different ages whom one acts older than his he is and another who emotionally acts younger than what he is… And a puppy. Omg I have triplets! I have one who is extremely verbal, one who attempts to communicate in every aspect(typically), a toddler pup who(like a toddler) listens when they want, and a husband who is being as supportive as he can, but also needs a break. Why can’t you guys understand that we are doing our best? Support us? Love us? And just give us the “stamp of approval” that we are doing a good job?

We, parents with “out of sync” children are doing the best we can. Why can’t you believe us when we say our children are a little odd? Live in our shoes. Live in our lives. Live with the guilty feeling that even though we have put all the reward charts, chore charts, daily schedules, dietary restrictions, stickers, sensory play, went to many doctor appointments, have numerous therapies in place to attempt to “heal” our children, that we still have the “it still isn’t good enough feeling”, that we suck and we must be crazy because no one else believes us….. PLEASE KNOW That we are trying, we are doing our best, we do rock at our jobs, and we do need a break from it…. We aren’t deadbeat parents! We do Care, or we wouldn’t be wasting our time. Give us some credit and try living in our shoes as we wish we could live in yours…. we wish we could live in the road that was more traveled….God just happened to give us the one that was less traveled. And I am beyond thankful for it!

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One thought on “My SPD Soapbox

  1. Can I say “Amen” loud enough? My SPD child is now 15 and her life is less crazy, but still a challenge. I’ve been home schooling her for almost 5 years now, and am thankful that I’ve been able to do so, but while it has been a positive thing for her, it has not always been easy. Hang in there because you are definitely not alone. It just really feels like it most of the time.

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